A photographic project involving a guy with Parkinson's Disease who has been photographed during the last nine years by over 420 different photographers.

Saturday, 18 June 2016

SOLARIXX - A Sad Story

THERE IS NO FREEDOM WITHOUT SACRIFICE by SolarixxSol is from Argentina and she came over to England and this was the photograph she took of me. She is a lovely person but, unfortunately, she has now fallen on very hard times having contracted Lymes Disease which went undiagnosed for some years. Her very good friend Julian Holtom is helping her to try to raise enough money to pay for treatment in the USA. This is what he has said:

Marisol (or Sol her friends), an animal lover, artist and mother. As her two children grew up, she found had more time, and began to express herself through photography. Through this art from, she made friends across the world, and in the summer of 2012 she went to England, both to visit friends and to take part in the Tim Andrews project. What should have been a dream trip was to become the start of the nightmare, one she’s still living through today…While visiting England, she spent a lot of time in the North, and during one of many visits to the countryside to take photos, she was bitten by a tick. At the time, she thought nothing of it, and only a couple of weeks later returned home. Shortly after she started to feel unwell but ignored it thinking it was only a cold due to the change in climate. As time went on, her health never quite recovered, and in fact, it slowly declined month after month.Despite living with these hellish symptoms, and with her health deteriorating day on day, she doggedly continued her research. She suspected Lyme from the outset, but had been told there was no such thing in the UK, largely believed due to government misinformation. However many recent high profile case have shown this not to be the case, and it’s believed there are around 3000 cases of Lyme every year in the UK. By the middle of 2015 she finally had tests done, to make sure this was the disease at the root of all that had happened to her. Unfortunately there are no LLMD Lyme literate doctors in Argentina , so Lyme isn’t tested for in her country and they don’t consider it a problem, so she had to get testing elsewhere. Her research came up with continued recommendations to use Armin labs in Germany. The tests themselves were expensive, and it took all of her family pulling together to raise sufficient funds to pay for them. Even then, she was beset with more hurdles - government red tape in order to get her blood samples out of the country and a very short time frame for which the blood samples were viable. After much form filling and passing time, this was finally given the all clear and her blood went to the lab.A week later, the lab sent back their report. Sol had Lyme… She also had a coinfection called Coxsackie-Virus. Finally a definitive answer and proof that her illness is real, and confirmation of what she’d always suspected.Sadly Lyme disease is often misdiagnosed, presenting an ever confusing set of symptoms, and by the time it is correctly identified, the appropriate treatment is no longer viable and the damage is done. For Sol, this journey to discover what had destroyed her health, has taken almost 3 years. Over that time, possible diagnoses have been; ME, Fibromyalgia, anorexia, Vitamin D3 & B12 deficiencies and even depression. She’s emptied her bank accounts and that of her family paying for treatment protocols for them all, and unfortunately, none worked.As Lyme had run unchecked for so long, it has wreaked havoc with her body’s immune system. Ultimately this led to further complications such as Erythromelalgia, which makes her feel like her feet are being held over a roaring fire. She also developed POTS, which is exacerbated even more due to the fact she’s bedridden for 22 hours a day. She suffers from constant chronic pain and has to attend hospital regularly for IV meds to help manage them, which themselves cause further complications with her health. A once vibrant soul, who had such love for life, family, friends and creating art, feels as if she has nothing now; an empty husk only filled with constant pain. Which denies her even the simplest of life’s pleasures, and now requires support to perform even the most basic of daily routines... she can’t even go to the bathroom unaided, So, where does this leave Sol now? Well, there is potentially some light as the end of the tunnel; there are some treatments available in the US, but of course the US health system is largely privatised so all costs need to be met by the patient, and they’re not cheap. Also, Sol needs a constant carer to help her, so travel and accommodation would need to cover this also.The clinic she wants to attend is in Washington DC, and treatment costs approximately £60,000, so we’re looking to raise this sum to help her get the treatment she needs.All expenditures will be accounted for and made public, and should there be any unused funds raised they will be donated to a Lyme research charity.So please, help Sol get her life back. All she wants is a life free of constant agonising pain.

Every amount, no matter how small will help Sol - I realise that times are hard financially for everyone and that there are many deserving causes which require funds but if you can see your way to making a donation, this could lead to Sol getting her life back.

1 comment:

Ah blimey Tim, this is very sad to hear, I've read about another case of this only today in fact and it really made me think.. Thank you for sharing this, I hope I can give a little financially. The photograph sol took is truly stunning too. xx